Discussions By Condition: I cannot get a diagnosis.

is it PCOS or not?

I have been trying to find out what is wrong with me for over 3 years now. I am a 22 year old female and my husband and I have been TTC for years and nothing. I don't have periods. I used to just have irratic periods, but since the past year or so, I haven't had any on my own. My doctor has done all kinds of blood tests and such thinking I have PCOS since I had sudden weight gain. All my hormone levels are normal, including my testosterone levels which is an indicator of PCOS. I had an ultrasound done, no cysts on my ovaries, everything looks fine. My thyroid is fine. My adrenal glands are fine. We even did an MRI on my head to look for tumors and at the pituitary glad. EVERYTHING is 100% ok! But I am not having periods and I am not ovulating.My doctor has referred me to an endocrinologist to see if he has any idea of where to go from here, if theres another condition, another test somewhere we can do to get a diagnosis. But she told me that if the endocrinologist can't help, then she is going to diagnose me with PCOS, eventhough I have none of the symptoms.Does anyone know of any other conditions or anything out there? PLEASE HELP!

3 Replies:

Seeing an endocrinologist is a good idea. One particular reason is that I know firsthand about thyroid issues. Although your doctor may have told you your thyroid was fine, it may very well have been based on TSH only. I saw 3-4 doctors before I was given the detailed thyroid tests I needed and saw a doctor who knew better about the old idea of TSH of 5 is perfectly normal. (In fact, they were telling me I was depressed when I knew otherwise and told them so!) Now, if you do actually have a thyroid problem, it’s more likely that you may be hyperthyroid (as opposed to my Hashimoto's hypothyroidism) due to the absence of periods. Both hypothyroidism and hyperthyroidism can cause infertility if you are not being treated. The good news is that from all that I have read, this symptom can be reversed with treatment. I’ve found Mary Shomon, a patient advocate, to be a wonderful resource for thyroid information. Her website is http://www.thyroid-info.com/ . You can also find articles on About.com written by her, as she is the Thyroid Guide writer. Both sites have a wealth of information. Now if you do find out that you do in fact have a thyroid disease, you will want to read her books. Additionally, you may want to take a look at the articles below, which I found on WrongDiagnosis.com: http://www.wrongdiagnosis.com/p/pcos/misdiag.htm http://www.wrongdiagnosis.com/h/hyperthyroidism/symptoms.htm - symptom_list http://www.wrongdiagnosis.com/h/hypothyroidism/symptoms.htm - symptom_list Hyperthyroidism symptoms: Heart palpitations; accelerated heart rateChest painA feeling of being too warm all the timeNervousness and tremblingInsomnia despite feeling exhaustedBreathlessnessDiarrhea and GI upsetIncreased appetiteLight or absent menstrual periods; infertilityWeight lossMuscle deteriorationWarm, moist skinHair lossBulging eyes, “spacy” gazeHeightened anxiety, irritability, moodiness or depression Alternatively, the symptoms of hypothyroidism are as follows: severe fatigue, loss of energyweight gain, difficulty losing weightdepression and depressed moodjoint and muscle pain, headachesdry skin, brittle nailsbrittle hair, itchy scalp, hair lossirregular periods, PMS symptomsbreast milk formationcalcium metabolism difficultiesdifficulty tolerating cold and lower body temperatureconstipationsleeping more than averagediminished sex drivepuffiness in face and extremitieshoarsenessbruising/clotting problemselevated levels of LDL (the “bad” cholesterol) and heightened risk of heart diseaseallergies that suddenly appear or get worsepersistent cold sores, boils, or breakoutstingling sensation in wrists and hands that mimics carpal tunnel syndromememory loss, fuzzy thinking, difficulty following conversation or train of thoughtslowness or slurring of speech Different sources vary the symptoms lists. Keep in mind that, as with many medical disorders, you may only have a few of the symptoms. And just because you don’t have a hallmark symptom of a disorder doesn’t mean you don’t have it. Also, I have finally learned that many times basic/general tests won’t reveal certain problems (e.g.: thyroid disease, pre-diabetes). You may have to insist on more detailed, targeted tests – even if you have an excellent doctor. I also found this quiz which I linked below from the PCOSupport.org website which you might want to take and show to your doctors: http://www.pcosupport.org/support/quiz.php I know this is a lot of information, but when you’re searching for a diagnosis, information is what you need so you can rule out or dig deeper. This is really only a tip of the iceberg of information. Hope this helps.

I have poly cystic ovaries. Sometimes it shows up in an ultrasound sometimes it doesnt. One time the cysts was big enough they thought it was an ectopic pregnancy. The last ultrasound showed nothing. I have thryroid problems, again...sometimes they show up sometimes they don't. Depends on the doctor reading ur report, or the lab running it, or EXACTLY what they are looking for. Has your doctor ever tried putting you on metformin? I have irregular periods now, I used to every once in awhile, but mostly they were normal. Now , they are sometimes every 2 weeks! It's really strange. My GY just prescribed birth control for me, and even with that, my period was a almost a week early. so I dunno. An endo is definetly a good Dr. to see. You just never know what doctors are going to throw out there. What means nothing to one, means something to another. Some tests need to be run over and over, or fasting or some other situation needs to occur for the correct results to come out. Never be afraid to get a second opinion if all else fails! When I was pregnant, my first OB told me women with PCOS don't get pregnant, I said well evidentally we do! Soon after she called me yelling at me for another situation, I found another OB who told me that my previous one didn't know what she was talking about ...HAH! Anyways, my point is, you just never know with doctors. Be persistent. You can demand they do a test or not do one...dont be afraid to either! Metformin is used to treat insulin resistance but it is also used for PSOS and helps increase fertility.

Hello! My name is Christiana. I am 28 yrs old. I am writing here b/c I have had a issue for so long in my life, and I would like to figure it out and get the help I need.I start having my monthly womanly visitor since I was the age 12. I was a heavy set child from the age of 7, I even produced my breasts around this age. My mother asked the doctors questions on why I was growing breasts at such a young age, and she got answers like oh its just baby fat. Well, anyways, when I started my menstrul cycles, even then they were heavy. I also in the same year got this mark, not quite like an abcess, not quite a pimple, not even a lump, just this mis-shaped mass under my left armpit. My mother asked drs what it could be, and at first no one knew. then it was a cyst. then it was a large amount of acne. Every dr. says oh we could cut it out and test it. Well, yeah, ok, thats cool, can you put me to sleep? NO! Well, No, i cant do it. 1 I fear needles, and 2 I dont handle pain with grace. SO I go throught the years (16 yrs) still asking, seeing my primary care, and obgyns. Well then it comes out as PCOS. Several drs. tell me that this is what the issue is. They put me on Birth control, and say only come off when you wanna concieve, so I do that b/c I do, I really do want kids. They put me on glucophage, My insulin levels are to high, and although i do not have diabetis this will lower my levels. so i do that. I have Extreme hair growth on my arms, and chin, and pretty much anywhere you could think of, so I start taking aldactone. I've gone for MRI's, blood work, urinalasis. Well, now through out the yrs, without the birth control, i go months upon months without a mensous. I have more under BOTH of my arms now, and goddess are they painful. Growing to the size of soft balls at times, and filled with infection. They burst and puss and blood go every where, ruining my clothing. i dont own one shirt with out the discusting mess ruins on them. I have also gained these marks in my sides, on my private regions, under my belly, my legs, buttocks. You name it, I think my body has found new places to overwhelmingly torture me. Now the other Major issue I have is, (now back to the beginning) I am over wiegh for my age, and hieght, and I feel I've NEVER had control over it. From the age 7 to now (28), I have gained a very LARGE amount of wieght. I am now 5'9" and 350lbs. Now today I am sitting watching TV and my sister text messages me and says to turn on TLC. There is a program she feels I need to observe.There was a woman on there who pretty much went through her full life with my same exact issues, and told by several people she had PCOS, and then that no she did not, in a repetative manor of back and forth. SAME AS ME. She now knows she has nonclassical congenital adrenal hyperplasia. I need help. I need to know what I have, I need to get this handled. I want to lose the wieght, and the sores, and HAVE KIDS. I want children.My email address is : Christiana_latshaw80@yahoo.com Please, If there is a study, or anything that you feel i may gain something from, inform me, please.Thank you for your time.